Worried!!!

Degood,

So sorry you are going through this.  I hope you are getting some good information on the ocular board.  Can I ask you where you are located and where you have been seen so far?  Are you able to travel to clinical trial sites if need? 

Look at this thread on MIF and look at the post by Johnathan on 28 June.  He's in a trial that seems to be working well for ocular melanoma.  It's a long shot but thought I would pass it on.

http://forum.melanomainternational.org/mif/viewtopic.php?f=54&t=34242&hilit=adc

Brian

Degood,

So sorry you are going through this.  I hope you are getting some good information on the ocular board.  Can I ask you where you are located and where you have been seen so far?  Are you able to travel to clinical trial sites if need? 

Look at this thread on MIF and look at the post by Johnathan on 28 June.  He's in a trial that seems to be working well for ocular melanoma.  It's a long shot but thought I would pass it on.

http://forum.melanomainternational.org/mif/viewtopic.php?f=54&t=34242&hilit=adc

Brian

Degood,

So sorry you are going through this.  I hope you are getting some good information on the ocular board.  Can I ask you where you are located and where you have been seen so far?  Are you able to travel to clinical trial sites if need? 

Look at this thread on MIF and look at the post by Johnathan on 28 June.  He's in a trial that seems to be working well for ocular melanoma.  It's a long shot but thought I would pass it on.

http://forum.melanomainternational.org/mif/viewtopic.php?f=54&t=34242&hilit=adc

Brian

Hi,

Honestly I do not think that being a doctor always means knowing what compassion is or maybe even applying it. One should assume that they are used to treating patients with terrible illnesses and to communicate accordingly but this is often not the case.

from your discriptiom it seems to me that the way he treated you and he communicated was far way from right and this was a very negative experience for you and xour husband. The way you write tells me you do not trust him really,

i cannot make any medical recommendations here but would advise you to see another melanoma specialist to get a second opinion before rushing into something. I thing it is very important to find somebody you trust.

Hi,

Honestly I do not think that being a doctor always means knowing what compassion is or maybe even applying it. One should assume that they are used to treating patients with terrible illnesses and to communicate accordingly but this is often not the case.

from your discriptiom it seems to me that the way he treated you and he communicated was far way from right and this was a very negative experience for you and xour husband. The way you write tells me you do not trust him really,

i cannot make any medical recommendations here but would advise you to see another melanoma specialist to get a second opinion before rushing into something. I thing it is very important to find somebody you trust.

Hi,

Honestly I do not think that being a doctor always means knowing what compassion is or maybe even applying it. One should assume that they are used to treating patients with terrible illnesses and to communicate accordingly but this is often not the case.

from your discriptiom it seems to me that the way he treated you and he communicated was far way from right and this was a very negative experience for you and xour husband. The way you write tells me you do not trust him really,

i cannot make any medical recommendations here but would advise you to see another melanoma specialist to get a second opinion before rushing into something. I thing it is very important to find somebody you trust.

I'm sorry you're dealing with this; it's very hard!  My father was diagnosed with ocular melanoma, also somewhat out of the blue.  He felt a lump on his head, and when it was removed, it turned out to be melanoma metastasized to the skull bone.  They could not initially find a primary, but after a few months, eye specialists decided it was probably due to a very tiny, flat spot in the back of his eye– ocular melanoma.  I just wanted to shed some light on what your (cold, abrupt, rude) doctor may have meant by "no use to put him through eye treatment."  Our very kind ocular specialist explained the methods of directly attacking the melanoma in the eye, but she also said that since the melanoma had already spread, she advised we pursue a systemic treatment (designed to treat the whole body) rather than the specific eye treatment, which would be somewhat painful and hard to take, and would not address any other melanoma sites.  A systemic treatment, on the other hand, would have the possibility of also addressing the eye issue in addition to other areas.  However, my father's eye spot was not affecting his vision, and the doctor did say that in the event his vision were threatened, they would reconsider whether to go through with the eye treatment (implanting irradiated plaques).

I would strongly suggest getting a second opinion/ changing doctors.  I understand your guy is supposed to be the best in the state, but he sounds terrible nonetheless.  If you post where you are located, some people may be able to suggest alternatives.  Dr Sato at Jefferson in Philadelphia is supposed to be tops in the nation at ocular melanoma, and I hear he is also very caring.  My father saw doctors in San Francisco– Dr Stewart at UCSF and Dr Phan (enormously kind and over-and-above helpful) at Kaiser SF.

Selumetinib was shown by clinical trial last year to have an effect on ocular melanoma.  Jonathan has also reported good results for OM from his clinical trial, linked to above.  Nothing else, to my limited knowledge, has specifically been shown to have efficacy in ocular melanoma– but you should also very much keep in mind that OM is a small subsection of melanoma patients, and therefore drug companies do not usually run tests to scientifically prove efficacy in OM one way or another.

I'm sorry you're dealing with this; it's very hard!  My father was diagnosed with ocular melanoma, also somewhat out of the blue.  He felt a lump on his head, and when it was removed, it turned out to be melanoma metastasized to the skull bone.  They could not initially find a primary, but after a few months, eye specialists decided it was probably due to a very tiny, flat spot in the back of his eye– ocular melanoma.  I just wanted to shed some light on what your (cold, abrupt, rude) doctor may have meant by "no use to put him through eye treatment."  Our very kind ocular specialist explained the methods of directly attacking the melanoma in the eye, but she also said that since the melanoma had already spread, she advised we pursue a systemic treatment (designed to treat the whole body) rather than the specific eye treatment, which would be somewhat painful and hard to take, and would not address any other melanoma sites.  A systemic treatment, on the other hand, would have the possibility of also addressing the eye issue in addition to other areas.  However, my father's eye spot was not affecting his vision, and the doctor did say that in the event his vision were threatened, they would reconsider whether to go through with the eye treatment (implanting irradiated plaques).

I would strongly suggest getting a second opinion/ changing doctors.  I understand your guy is supposed to be the best in the state, but he sounds terrible nonetheless.  If you post where you are located, some people may be able to suggest alternatives.  Dr Sato at Jefferson in Philadelphia is supposed to be tops in the nation at ocular melanoma, and I hear he is also very caring.  My father saw doctors in San Francisco– Dr Stewart at UCSF and Dr Phan (enormously kind and over-and-above helpful) at Kaiser SF.

Selumetinib was shown by clinical trial last year to have an effect on ocular melanoma.  Jonathan has also reported good results for OM from his clinical trial, linked to above.  Nothing else, to my limited knowledge, has specifically been shown to have efficacy in ocular melanoma– but you should also very much keep in mind that OM is a small subsection of melanoma patients, and therefore drug companies do not usually run tests to scientifically prove efficacy in OM one way or another.

I'm sorry you're dealing with this; it's very hard!  My father was diagnosed with ocular melanoma, also somewhat out of the blue.  He felt a lump on his head, and when it was removed, it turned out to be melanoma metastasized to the skull bone.  They could not initially find a primary, but after a few months, eye specialists decided it was probably due to a very tiny, flat spot in the back of his eye– ocular melanoma.  I just wanted to shed some light on what your (cold, abrupt, rude) doctor may have meant by "no use to put him through eye treatment."  Our very kind ocular specialist explained the methods of directly attacking the melanoma in the eye, but she also said that since the melanoma had already spread, she advised we pursue a systemic treatment (designed to treat the whole body) rather than the specific eye treatment, which would be somewhat painful and hard to take, and would not address any other melanoma sites.  A systemic treatment, on the other hand, would have the possibility of also addressing the eye issue in addition to other areas.  However, my father's eye spot was not affecting his vision, and the doctor did say that in the event his vision were threatened, they would reconsider whether to go through with the eye treatment (implanting irradiated plaques).

I would strongly suggest getting a second opinion/ changing doctors.  I understand your guy is supposed to be the best in the state, but he sounds terrible nonetheless.  If you post where you are located, some people may be able to suggest alternatives.  Dr Sato at Jefferson in Philadelphia is supposed to be tops in the nation at ocular melanoma, and I hear he is also very caring.  My father saw doctors in San Francisco– Dr Stewart at UCSF and Dr Phan (enormously kind and over-and-above helpful) at Kaiser SF.

Selumetinib was shown by clinical trial last year to have an effect on ocular melanoma.  Jonathan has also reported good results for OM from his clinical trial, linked to above.  Nothing else, to my limited knowledge, has specifically been shown to have efficacy in ocular melanoma– but you should also very much keep in mind that OM is a small subsection of melanoma patients, and therefore drug companies do not usually run tests to scientifically prove efficacy in OM one way or another.

It appears that your husband has melanoma in at least 2 organs– skin and eye. This means that he is Stage IV. It is very important for anyone who is Stage IV to be treated at a melanoma specialty clilnic, or at least have a consultation at a melanoma specialty clinic. If such a clinic is available to you in Indianapolis, you would be wise to take advantage of it. 

The thing with melanoma is that Stage IV was considered untreatable for decades. Melanoma is notoriously resistant to conventional radiation and chemo. It is only recently, like within the last 3 or 4 years, that scientists have begun to develop some treatments that actually do work to slow down or even stop the melanoma. New treatments in radiotherapy, immunotherpy and chemotherapy are completely changing the picture for melanoma patients. 

The problem is that these developments are coming so fast that few general oncologists can keep up with all the melanoma literature–not in addition to all the literature about lung cancer, colon cancer, breast cancer, and all the other cancers that they treat.  In addition, the most recent research indicates that the best way to treat melanoma is to combine 2 or more therapies. That could be surgery plus radiaiton, or radiation plus immunotheray, or a long list of combo treatments. Knowing which combination is likely to be most effective for a given patient requires a team of melnaoma specialists that you would only find in a melanoam specialty center. Lastly, all of these treatments have their own side effects which are different in different people. The doctors, nurses and support staff at melanoma specialty centers know what to look for and how to treat side effects before they do serious damage to the patient. 

My brother was treated at a VA. His local VA hospital was actually pretty good about most things. But I could tell that as soon as he was diagnoses as Stage IV most of his doctors threw up their hands and recommended "palliative treatment". They did not know and/or could not prescribe any of the new melanoma treatments currently avaiable (the VA does not participate in any clinical trials and the best new melanoma treatments are only offered via clinical trials at this point). 

I don't know much about how to navigate the VA system. I don't know if your husband can stay with the VA system but use Medicare for his cancer treatments. But, frankly, I would not recommend that anyone with melanoma stay exclusively wiht the VA healthcare system. They're just not set up for time sensitive, cutting edge treatments. 

It appears that your husband has melanoma in at least 2 organs– skin and eye. This means that he is Stage IV. It is very important for anyone who is Stage IV to be treated at a melanoma specialty clilnic, or at least have a consultation at a melanoma specialty clinic. If such a clinic is available to you in Indianapolis, you would be wise to take advantage of it. 

The thing with melanoma is that Stage IV was considered untreatable for decades. Melanoma is notoriously resistant to conventional radiation and chemo. It is only recently, like within the last 3 or 4 years, that scientists have begun to develop some treatments that actually do work to slow down or even stop the melanoma. New treatments in radiotherapy, immunotherpy and chemotherapy are completely changing the picture for melanoma patients. 

The problem is that these developments are coming so fast that few general oncologists can keep up with all the melanoma literature–not in addition to all the literature about lung cancer, colon cancer, breast cancer, and all the other cancers that they treat.  In addition, the most recent research indicates that the best way to treat melanoma is to combine 2 or more therapies. That could be surgery plus radiaiton, or radiation plus immunotheray, or a long list of combo treatments. Knowing which combination is likely to be most effective for a given patient requires a team of melnaoma specialists that you would only find in a melanoam specialty center. Lastly, all of these treatments have their own side effects which are different in different people. The doctors, nurses and support staff at melanoma specialty centers know what to look for and how to treat side effects before they do serious damage to the patient. 

My brother was treated at a VA. His local VA hospital was actually pretty good about most things. But I could tell that as soon as he was diagnoses as Stage IV most of his doctors threw up their hands and recommended "palliative treatment". They did not know and/or could not prescribe any of the new melanoma treatments currently avaiable (the VA does not participate in any clinical trials and the best new melanoma treatments are only offered via clinical trials at this point). 

I don't know much about how to navigate the VA system. I don't know if your husband can stay with the VA system but use Medicare for his cancer treatments. But, frankly, I would not recommend that anyone with melanoma stay exclusively wiht the VA healthcare system. They're just not set up for time sensitive, cutting edge treatments. 

It appears that your husband has melanoma in at least 2 organs– skin and eye. This means that he is Stage IV. It is very important for anyone who is Stage IV to be treated at a melanoma specialty clilnic, or at least have a consultation at a melanoma specialty clinic. If such a clinic is available to you in Indianapolis, you would be wise to take advantage of it. 

The thing with melanoma is that Stage IV was considered untreatable for decades. Melanoma is notoriously resistant to conventional radiation and chemo. It is only recently, like within the last 3 or 4 years, that scientists have begun to develop some treatments that actually do work to slow down or even stop the melanoma. New treatments in radiotherapy, immunotherpy and chemotherapy are completely changing the picture for melanoma patients. 

The problem is that these developments are coming so fast that few general oncologists can keep up with all the melanoma literature–not in addition to all the literature about lung cancer, colon cancer, breast cancer, and all the other cancers that they treat.  In addition, the most recent research indicates that the best way to treat melanoma is to combine 2 or more therapies. That could be surgery plus radiaiton, or radiation plus immunotheray, or a long list of combo treatments. Knowing which combination is likely to be most effective for a given patient requires a team of melnaoma specialists that you would only find in a melanoam specialty center. Lastly, all of these treatments have their own side effects which are different in different people. The doctors, nurses and support staff at melanoma specialty centers know what to look for and how to treat side effects before they do serious damage to the patient. 

My brother was treated at a VA. His local VA hospital was actually pretty good about most things. But I could tell that as soon as he was diagnoses as Stage IV most of his doctors threw up their hands and recommended "palliative treatment". They did not know and/or could not prescribe any of the new melanoma treatments currently avaiable (the VA does not participate in any clinical trials and the best new melanoma treatments are only offered via clinical trials at this point). 

I don't know much about how to navigate the VA system. I don't know if your husband can stay with the VA system but use Medicare for his cancer treatments. But, frankly, I would not recommend that anyone with melanoma stay exclusively wiht the VA healthcare system. They're just not set up for time sensitive, cutting edge treatments.